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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

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Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  mcm on Tue Nov 27, 2012 2:17 pm

Thank you so much for this forum...

I will make this brief but would greatly appreciate your input. My 18 year old daughter is going to be registering here in the future, for much needed support beyond what "mom" can offer - but I do have a very important question I'm hoping you can help with...

A year ago, my daughter started complaining of vulvar pain and we just "rode it out" for a while. She had/still has a steady boyfriend, was sexually active - wasn't sure what it was, but felt certain it was related to intercourse or latex allergy, etc. Then she noticed a little "tear" so off to the ob/gyn we went last spring. The gynecologist did not diagnose VV at that time. Then she put silver nitrate on the tear! At that appointment she said the sting should go away in 24 hours, etc.

Well as you might guess, the pain intensified x 1000 for weeks, making us go back for follow up. The skin tear was gone, the tissue looked perfect and healthy, yet my daughter couldn't bear the pain of touch in the area.

THAT was when she was diagnosed with VV.

Since then, we have absorbed everything on virtually every VV site on the internet, we devisied a care "plan", trying one thing at a time, taking notes on any change. To date, nothing helps and my daughter is becoming very depressed. But we haven't been at this long and we have many hopeful things to try in the future.

Here is what keeps nagging at me as we keep trying this, trying that:

How did the silver nitrate on already damaged VV tissue impact my daughter's recovery (can tissue recover from silver nitrate, will response be longer, pain be worse)?

I can see how this "error" could happen with women who initially present with a tear/abrasion in the area...with gyne not thinking it is VV at first. I worry this gyne made things much, much worse by using this treatment. My daughter's pain has certainly been worse since silver nitrate was administered last spring. I'm upset that her doctor did this, absolutely...but my energy needs to be spent on helping my daughter find peace and healing.

Thanks so much in advance for your time...

mcm

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Wed Nov 28, 2012 7:43 pm

I know absolutely nothing about silver nitrate, but once you have Vulvodynia, you have it, there is no "recovery". You can try different treatments, or I'm doing surgery to help resolve mine...

As for being made worse and from last spring, I'd assume its going to stay like that, but get a knowledgable doctor regarding VV and you should be on a good path. I know when I tried different things if it was made worse, there was no getting better by itself, but everyone's different and there are treatments. Where are you from?

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  mcm on Wed Nov 28, 2012 8:40 pm

Thanks for your reply...

My concern with my daughter's vestibulitis is that the painful area already has thin skin, susceptible to tears, etc. Nerves are more sensitized in that area already - so worried that the silver nitrate caused even more damage to nerves. Her pain was never as bad as it has been since it was administered.

I call both Montana and Illinois home, by the way (rv full time)...

mcm

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Wed Nov 28, 2012 8:56 pm

I don't mean to be a party pooper, but (at least in my case) when the damage is done its done and I had to just move foward and not focus on what happened in the past. That being said most doctors are morons. I have an amazing doctor down here in Florida if you can work up to coming here he is doing my surgery but really is conservative and will help with your needs. Where in Illinois???

I don't even know what silver nitrate is to be honest but I'm assuming if it caused damage it won't be reveresed, but I don't know for sure, I'm just going off my personal case. I will tell you though, my pain was made worse with certain treatments. Thin skin could have atrophy and there is hormonal treatment for it... But all of us who have vv unforunately have a ton of nerve issues. Sad

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Sarah001 on Wed Nov 28, 2012 10:12 pm

I'm very confused why silver nitrate was used, here's a link:

http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?medicine=Silver%20nitrate

It would seem to imply the doctor thought he was dealing with warts but it does state it should not be used on genital warts so it seems it would definitely be inappropriate to use it on your daughter's tear.

Some forms of vulvar pain do produce tears in the skin, my physio has mentioned it briefly to me before but not in depth as I don't have tears. I don't know if the area will calm down or not, I have seen a few women on forums who've had tears during childbirth mention silver nitrate and some of them have said it has since calmed down so it's still possible. My advice to anyone is try everything you can by yourself first so removing irritants, calcium citrate tablets and the low oxalate diet, being screened for evey infection possible and steroid creams for a week and no longer to see what happens. After that read "When Sex Hurts" which helps establish the cause. It is possible your daughter has tensed her muscles up because of the silver nitrate pain and they could need some physio (PT) or perhaps medication would dull the pain down in the meantime too. If something makes no difference there's nothing to be gained by obssessing about it so in my case removing bubble bath didn't help so I put it back in again. There are a couple of books about the PT angle if you want to read them, "Ending Female Pain" by Isa Herrera and "Heal Pelvic Pain" by Amy Stein, they can be helpful in giving an idea of what needs to be done, biofeedback on it's own isn't going to help if there are trigger points etc etc. Relaxing the pelvic floor is explained in both books and if it helps to relax it at all it's worth pursuing PT.

I hope your daughter finds her cause and cure and don't listen to anyone who says she will never recover because without knowing the cause it isn't possible to make such a prediction.
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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Wed Nov 28, 2012 10:56 pm

Wait a second I never said she wouldn't recover if that was in reference to me I would never say that! But that being said there are lots.of.options to go thru

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  mcm on Thu Nov 29, 2012 12:29 am

Oh Geez,

I hope I was clear enough...never meant to cause a rift...

I'm gonna try once more (and appreciate everyone's input! thank you!)...

Before ever knowing my daughter had vestibulitis (even before her gyne made the diagnosis), my daughter had a small "tear." Doc thought tear was from intercourse OR latex allergy OR tampon use, etc...it was an "out of the blue" thing and tissue looked healthy, so assumption was made that my daughter's pain was from tear.

Silver nitrate was used to "quickly heal up the tear" and would "be better in a few days." However, now that we know it was vestibulitis, with thin skin exposing more sensitive nerves, etc...adding that onto such damaged skin caused much, much more pain for the long haul.

I'm not looking backwards wishing we didn't do it...I'm wondering if silver nitrate incorrectly being placed on vestibulitis tissue will make the different treatments/trials we are doing much less likely to succeed...causing MORE damage to already damaged tissue. Did it make an already uphill climb become a nearly 100% vertical climb?

Hope this clarification helps?

Thanks again....

mcm

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Thu Nov 29, 2012 4:05 am

No rift I just wanted to make sure I wasn't saying it was a cure. Honestly it's a question for the doc but I can safely tell you that my problem was made worse from drugs however I was given periods of relief. Regardless of whether or not it was made worse there are possibilities to make it better. I doubting made it any more or less worse but the treatment is the same I would imagine I honestly wouldn't concentrate on that idk whether anyone can tell you if it made it worse but.im not sure it matters or has a huge effect. The only thing id it would have an affect is id it miraculously went away which .bb it gonna lie would be awesome!

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Sarah001 on Thu Nov 29, 2012 1:51 pm

It's not referring to you Alana3 it's referring to all the people online and offline who will say it can't be cured without even knowing what the cause is.
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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Thu Nov 29, 2012 1:58 pm

Ahh gotcha, sorry I just wanted to clarify and mention that's not what I meant if it came out like that lol I'm the first that will say there can be something done.

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Alana3 on Thu Nov 29, 2012 2:22 pm

I just read about silver nitrate from a vulvodynia point of view. Essentially, it is used for bladder pain and if you have cervix bleeding (and perhaps warts I didn't get into that). Most of the people said they ALSO had vulvodynia but the silver nitrate was NOT used for that particular issue. Some people said it made their problems worse. Others were used for cauterization or granulation. So perhaps this was a treatment for your daughter's tear, but in some people it works and others it doesn't? Just like every other treatment for vv- sometimes it works sometimes it doesn't. That's what I got out of what I read, but again I could have misinterperted it and I only read a few things, but none were mentioned for specific vulvodynia but other gynecological issues (which I'm guessing is what the doctor thought she originally had).

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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

Post  Loulou on Sat Dec 01, 2012 10:00 pm

Mcm - i don't know anything about silver nitrate but if it has further irritated your daughter's already irritated skin then i guess it might take a little longer for things to settle down. But people respond to treatments differently and heal at different rates so its impossible to predict. My personal view, based on my own experience, is that i would be wary of further topical treatments in her situation - if you keep putting stuff on an irritated vulva (stuff that is not natural to your vulva) its not going to help when the nerves are on fire. Is it possible to focus on non-topical treatments first e.g. physical therapy? Even if tight pelvic floor muscles aren't the primary cause of your daughter's vvd it is likely that they will have tightened up in response to the pain (a guarding effect), so some physical therapy might help ease your daughter's pain somewhat to allow her to then try other treatments.

Also I think the body does have an underlying natural need and drive to heal in order to be in a healthy balanced state (i'm got a bit evangelical about that since my vvd!) so i've been giving it as much of a helping hand as i can by being as healthy as possible so your daughter might want to try this too - good multivitamins (especially the B vits which help with repair of nerve damage), exercise (gentle yoga and pilates have helped to significantly reduce my pain), plenty of sleep, manage stress, etc. At the very least doing all that won't make things worse!


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Re: Help Please - Doctor Put Silver Nitrate On Daughter With VV - What Does This Mean For Recovery?

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